My Next Posting to the Group was on  23 July 07

Follow up to my first post.

Well, Folks, here it is. The continuing saga of what one stupid dude did not do-- that's me, the stupid one-- and what happened because of it. In my first post I had gotten a Gleason score of 9 from a biopsy. I was awaiting the results of a bone scan, CAT scan, and new PSA test. Got the results 19 July. To say I am in deep doo doo would be an understatement.

For many years I have been aware that prostate problems run on the male side of my family. Grandfather died of prostate cancer, father had a roto-rooter job done but had problems all his life. He died from other causes. Around 2000 I got a PSA test. 3.5 or so. Not until February 2006 did I get another one. 20. That was the first time I had to go to an ER, get a catheter inserted, and drained. The catheter stayed in pending my seeing a urologist in the medical complex at the hospital. The results of the visit and what happened until June 2007 I related in my original post.

19 July 2007

Doomsday? Certainly the day a ton of reality dropped squarely on my head from about 50 feet. Or did it just feel that way?

Waltzed into the urologist's office, neatly groomed, neatly dressed, at least for me-- shorts, T-shirt, sandals-- long hair tied back in a pony tail, beard more or less brushed down. I was there to have a catheter changed and to get the reports. Smiles all around, I climbed on the table, the catheter was replaced. Moved to a desk and the doc handed me copies of the reports. He took his seat as I read the reports.

(First report was the PSA score. Normal range is 0-4. This is a blood test that detects cancer cells that may be present. It is a good, initial screening test in addition to a urologist doing a digital rectal exam. DRE  I.e., he sticks his gloved and greased finger up your butt and feels the prostate to see if he can detect any abnormality with it. Don't worry about the DRE. It is over fast and only slightly uncomfortable. You'll sigh with relief when he pulls his finger out.)

I started to read the reports:

PSA?

Good grief, Charlie Brown!!!

322.73

I mentally picked myself up off the floor.

That ton of reality started making a bee line for my head.

Bone scan report: Metastasized. (This means the cancer has spread out of the prostate, where the cancer cells originate and migrated to the bones. It is painful as hell and you will know when it has happened!) 

(Official Language in the Report) "Radiotracer activity in lower cervical, thoracic, and the lumbar spine. Increased activity identified within multiple anterior and posterior right and left ribs. Increased uptake present within the sacrum, iliac bones, pubic bones, and ischia bilaterally. Increased uptake present within the proximal femurs bilaterally."

Final statement was: "these findings are consistent with diffuse metastatic disease."

Yep, I kinda figured that out when I read the first sentence in the report summary.

CAT scan report: After a statement of the various non-cancer related items found, old asbestos exposure, no evidence of other serious problems, the report concluded:

"There is CT evidence of Metastatic disease to the thoracic spine, lumbar spine, pelvis, and the proximal femurs."

That's when the ton of reality fully hit me!

The doc had a patient in another room waking up from some procedure and excused himself for a few minutes. I just sat there staring at the wall then reread the report conclusions hoping that somehow I read them wrong. Naw, I knew what all the words meant.

Stage 4!!! (Prostate Cancer is staged from 1 to 4, with 4 being the worse.)

I turned around and looked at the door. Nope! No grim reaper standing there with his scythe ready to cut off my cajones or whatever. Just to reassure myself, I felt to be sure they were still there. Yep, so far, so good.

Doc returned to the room and sat at the desk. For over an hour we talked. I had anticipated the report results and done my research, prepared a list of questions, noted various options, and went over them with the doc. First thing we had to do was to try and stop the cancer spreading.

Two options: surgical castration or drug castration to prevent the testicles from putting out testosterone and also dealing with the small amount the adrenals secrete, supposed to be 8% or so of the total. (Testosterone is the food of the cancer cell that enables it to replicate and spread. Cut off  the food and it does not replicate and spread. The cancer cells are still there but stopped. Ok, that's the theory I am working on. Unfortunately, it is the only theory that will enable me to survive long enough to see what else we can do.)

I had no problem with the surgical option, saying (tongue in cheek) that if the doc could put in a couple of billiard balls so I would look well hung at the beach...

Not an option. Sigh....

We decided on the drug approach. Injection of Lupron (it stops the testicles from producing testosterone)  every three months, indefinitely, but first a 30 day supply of Flutamide to stop the testosterone surge or flare when he does the shot. I got the pills the following day, 20 July and have been on them, one each, three times a day. I will be on this drug no longer than necessary to stop the flare since it can have some deadly side effects with long term use. I may get the shot this week. I will have extensive lab work during the treatment: CBC, testosterone, dihydrotestosterone, PSA, and prostatic acid phosphatase or acid phosphatas, kidney and liver function tests and whatever else is needed.

I did luck out in one way. I have Medicare part A and B but was able to get a state medical card and QMB benefits that cover the part B premium, deductible, and co-pay on both parts. My little social security check will not be touched. Big sigh of relief. $400 does not go that far these days, even though I live in a small travel trailer that I pull with a Ford 150 pickup and park free, off the electrical grid. It is way too hot here to go anywhere. Right now I have a free full hook up for the summer: electric, water, sewer, courtesy of a an excellent friend. The QMB benefit frees up the part B premium, ninety some bucks a month, to help out with gas for the rig to Baltimore.

Will the treatment work? Good question.

Right now I must stop the spread of the cancer. The drugs are supposed to do that. If I can't get the growth stopped, any other treatments or miracle cures down the road ain't worth diddly squat. Once I leave the Slabs around the end of April and return to be with family in Baltimore, I will get set up at Johns Hopkins and assess what can be done further. There are more options.

That's about it for now.

If the drug works, I'll let you know.

If it don't... I don't think they have invented a way to access the Internet from six feet under.

Next Chapter in the Saga: 24 July 2007:

YIKES!!!

Just found this information on the net. True?

“Iron is required for cell division, and it is well known that many cancer cell types selectively accumulate iron for this purpose. Most cancers have large number of iron attracting transferring receptors on their cell surface compared to normal cells.”

For a couple of years I have been taking once a day supplement vitamins. After I read this, I picked up the bottle and looked at how much iron is in each cap. 18 mg, 100%. If the statement above is true, I've been feeding the cancer cells! I know you get iron as part of any normal diet but I have been adding much more.

Then, I read this: “It is well known by physicians specializing in supportive nutritional cancer protocols that iron fuels cancer growth.”

You is probably way ahead of me on this: After I read the ingredients on the vitamin bottle label, I aimed it toward the trash can. Went in the first toss.

26 July 2007

*****************************

I belong to a few RV groups and prostate groups. Got some nice messages from them. Here is a note I sent to them:

"I wish to thank everyone who responded to my little announcement. I am able to spend hours on line getting the latest info, learning things I need to know, and learning how right my urologist was about the two meds I will use for now. I will be putting updates on my Saga page listing things I have learned, how I am doing, and what various test results are when they are done.

"Right now as to the cancer, I am kicking ass and taking names!!!

"And if that ain't 'I'm mad as hell and ain't gonna take it no more' I don't know what is!"

******************************

Then I got a suggestion from one of my RV friends:

*************************************

"I know that it is a slogan you can use. 'Cancer's ass is grass  and I'm gonna be the lawnmower'.  You've kicked ass and taken names now you can mow it down!"

**********************************

That suggestion sounds like a weiner to me!